• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Hikaru

    For those who still catch colds/flu: do you go to the doctor for it?

    I usually do if it seems like it's getting worse within a few days, I develop bronchitis and pneumonia easily from both of those if I ignore them when they are more than mild.
  2. Hikaru

    Sleep Tracker - Anyone can recommend one?

    I ordered a Mi Band 2 for this and heart rate monitoring since I have a Xiaomi smartphone as well and they are quite cheap. It's not here yet but I can post about what it's like once it arrives.
  3. Hikaru

    A painful night.

    My husband and I had an awful fight last night about me not spending time with them due to CFS. I'm just...so drained now. I'm too out of it to go into detail, all I know is that it cuts deep and I don't know if he will ever understand. I asked him to watch Unrest with me, he might. I hope so...
  4. Hikaru

    Is anyone else terrified of catching the flu?

    I'm scared as well since it's been a nasty flu season here too, and the last time I caught it, it led to pneumonia, and I nearly died from it because it got so bad. It was before I starting having CFS symptoms so I can't imagine how bad things would be if I got that sick again. I'm housebound...
  5. Hikaru

    After Christmas crash

    This was my first holiday season after I was diagnosed and I crashed so hard after Christmas that I'm still recovering from it. It's almost like it sent my baseline level of fatigue lower than it was before and I'm worried it will stay like that. You aren't alone in your suffering, I'm sorry...
  6. Hikaru

    Infectious diseases specialist

    I hope you finally get the help you need, I'm waiting to hear back from this kind of specialist as well after I tested positive for EBV.
  7. Hikaru

    Hikaru

    • Hikaru
    • Blog
    • Blog entries: 2
  8. Hikaru

    A bit of venting.

    Wanted to get some stuff off my chest and figured this was the best way. I have had really bad PEM since Christmas Eve, I had to do so many things that my legs were giving out and I had to go rest. I'm glad my family understood I needed to rest but why push me to do that in the first place? I...
  9. Hikaru

    Sonic Sleep app to improve deep sleep?

    I've been sleeping much better with the Relax Melodies app on Android. It's especially good when I need to block out noise to sleep.
  10. Hikaru

    Throat problems?

    I've been having a perpetual sore throat lately, went to the doctor and they said it looked fine as far as any infections go. It's been slowly going away, in my case I think it was caused by postnasal drip from a cold that is taking a while to go away - for me it's more itchy than painful at...
  11. Hikaru

    Food or Drink Smells in Urine?

    I have the thing with coffee too - I've been thoroughly tested on kidney and liver function and everything came back normal, so it may just be that something in coffee can't be completely broken down by some people.
  12. Hikaru

    Rant

    Pretty much everything, like using ad blockers, firewalls, antivirus/antimalware, changing system settings to guard your privacy, all that kinda stuff.
  13. Hikaru

    Rant

    If I get enough energy back to be able to sit up and use my PC again, I could teach others how to secure their computer and things like that (my background is in IT). For now I'm thinking of the more esoteric stuff on there like tarot card readings and stuff like that. Everybody starts somewhere...
  14. Hikaru

    What is your personal theory or understanding of ME/CFS?

    For me, I feel like the theories stating CFS is an autoimmune disorder hold the most weight. My immune system has been hyperactive ever since I developed CFS (which started with a flu-like illness), and it's become the norm for me to have elevated WBC, so that makes the most sense for my case...
  15. Hikaru

    Finland - Help dealing with Kela?

    Currently I'm on sairauspäiväraha until the end of February. It was originally filed for panic disorder and severe depression. Both have gotten better, but now with my CFS diagnosis I'm not sure what to do after that since Kela won't recognise it. I'll talk to my therapist about this next week...
  16. Hikaru

    Rant

    Thanks for the warning, I reinvested my BTC in other things this month actually, so I should be alright. :) I have the same regret about ETH, if I had bought it back when it was $10 each it would have turned into a lot of money. I've thought about doing YouTube as well, and maybe finding...
  17. Hikaru

    Rant

    You sound just like me - I'm in my early 30s with a small CV, and having CFS makes me wonder if I can work since I had to drop out of my language and culture courses in my new country. I know how you feel. The only way I've made money this year that wasn't from welfare was on cryptocurrency...
  18. Hikaru

    How do you adjust?

    You were replying to someone else, I think things got a bit mixed up. You're right, and I appreciate all the advice in this thread. I've been trying to be more self aware of how tired I feel and remembering that I'm allowed to say no to doing things that are too much for me - I think a part of...
  19. Hikaru

    How do you adjust?

    Having been recently diagnosed, one of the hardest things for me right now is trying to learn to avoid overdoing anything. Once in a while I think, hey it's a good day and I feel decent enough to go outside, let's go to a basketball game...which turns into let's go to dinner and visit friends...
  20. Hikaru

    Letter to Valvira - Finland's National Supervisory Authority for Health and Welfare - CBT and GET

    I'm really hoping that the desire to develop guidelines will finally get Kela to treat it as an illness.
  21. Hikaru

    Suggestions on How to manage organizing pills?

    I use a pill organizer, but maybe something like a plastic box meant for jewelry findings with tons of compartments could work, you'd just have to label it yourself.